I have a daughter with Down syndrome, and she is 11 years old. She has been my inspiration for everything I do to make advances for people with disabilities. From the minute her butt hit the doctor’s hands, she has been in the government system. We left the hospital and became part of the government system for early intervention for infants and toddlers with disabilities. It was a wonderful program, and to this day, I attribute this program for much of how I think today. For three years, I was blessed to have the most amazing women come through my door. They helped my daughter learn to sit up, talk, walk, run. But for me… they gave me hope to move forward.
My daughter graduated from this program and I moved on to the developmental preschool program at our local public school. Ok… so you want me to put my three year old on a bus? In a car seat? To be with a bunch of other kids that have similar learning disabilities instead of typical kids she can imitate? I did as I was told… and then I quit. I promptly signed my daughter up for a regular preschool program and drove her there myself…AND… I didn’t ask to be reimbursed by the state for my mileage or tuition.
I couldn’t help but feel that I was being a little radical by bucking the system. I mean, everyone I knew fell in line and did exactly as they were told. I rebelled and I was concerned about what the consequences would be for my daughter if she fell behind. But, I did it anyway, and proceeded to make similar decisions like this every year. I told my teachers that I didn’t care too much about IEP’s and always preferred they think outside the box and not worry about the darn thing. I knew no one ever reads them any way, including myself. I had chats with the principal in her office instead of case conferences, and we truly enjoyed using my daughter as a guinea pig for different ideas. Basically, I did everything they told you not to do at the conferences about “what to do when you have a kid with a disability”. I watched so many families argue and fight with the schools, and I just never encountered this with the approach I took. My approach seemed to be working quite well; contrary to what others told me would happen.
But..I always had the safety net of a Medicaid waiver in my pocket. We rarely used it, but it was there in case something happened in the future. I hated the never ending line of government bureaucrats that paraded through my home over those years, asking what seemed to be an endless amount of meaningless questions. I liked most of the people…. but hated the intrusion. But I needed it right? I couldn’t let my daughter’s future be in jeopardy. I wrestled with why I was so suddenly able to do something I had always avoided at all costs in the past? The turning point for me was during the recent elections as I perused the multitude of polls. I found that over 70% of people wanted smaller government and taxes, but equally, 60+% were not willing to give up their entitlements. There was this disconnect.
Honestly, I had no choice in my mind… I had to give it up. Mind you, my husband makes a good living so I had some flexibility, but it’s not like we are millionaires either. I finally just decided that as long as my daughter was part of this governmental system, there would be subliminal cost to my soul. So…. we did what many consider crazy and we returned the waiver to the State.
After I got over a brief moment of fear, which my friend jokingly referred to as government withdrawal, I finally realized the heaviness that I had been carrying around for so many years. I called some providers and asked if I could go private and my husband began a new line item on our budget. But I have to say….. the freedom is exhilarating. I can’t really explain it, but I just have a peace about me that wasn’t there before and I think it is because I finally took control of my future instead of entrusting it to the government. Don’t fool yourself, government programs may be free, but they have a huge cost. And let’s face it, we all know the government’s history with providing quality services.
So how did this upper middle class gal find herself dependent on the government? Well, when your child is whisked into the system the minute they are born, you really don’t have time to think about it. You just do it. And for most of us, we need that assistance because we are in shock and we are just starting out in our lives and the associated expenses are too high. But what you don’t notice is the way the system begins to suck you in and you begin to just accept it as a way of life instead of the temporary resting place it was intended to be. In a perverted kind of way, the government promotes your participation in to it’s system – which is completely contradictory to the legislators’ intent to get you out. And stuck in the middle are families. It makes for some pretty heartbreaking moments.
I am not recommending that you walk away from all government services or cash in your waiver, (I’m sure if I did, there would be a long line of lawyers waiting to sue me), but just to consider if you really need all this stuff they say you need. And that if you are one of those 72% out there who say they want smaller government…… realize that if that is ever going to happen, someone has to be willing to give up something. Let’s be the honorable group and do our part.
Douglas Karr
November 7, 2010 at 9:30 amThis is an incredible blog post, Valerie. Thank-you for being so transparent, sharing your story with the world – and doing it knowing that you’ll be criticized. It’s courageous and what blogging is all about.
Valerie Strohl
November 7, 2010 at 4:55 pmThanks for your support Doug!
Linda Fisher
November 7, 2010 at 11:29 amVal, I respect your courage! I’m sending this to my sister who does speech therapy with special needs kids in Chicago. There’s got to be another way to deal with this issue, and hope your approach resonates with some people!
Valerie Strohl
November 7, 2010 at 4:51 pmThanks Linda – I’m so happy you found me. I agree, there just has to be a better way, and the only way that can happen is if we change the way we think. I hope your sister will put the word out!
Pamela Ackerman
November 7, 2010 at 5:23 pmThis is completely inspiring! Thank you for sharing your (continued) journey and for taking us with you as you step out on a limb that may just be stronger than you’d expected.
Valerie Strohl
November 7, 2010 at 5:29 pmThanks for your support Pamela. And yes, the limb is much stronger than I expected!
Sue H
November 7, 2010 at 5:52 pmThank you for sharing your story Val. I also decided to discontinue the services and to regain some peace and normalcy in our lives. I appreciated the help when we truly really really needed it and we were blessed enough to be able to discontinue those services and continue to make progress despite discontinuing those offical services, our journey has not ended by any means but continues to change and evolve over time. Also what a sense of freedom to discontinue those monotonous quarterly meetings which were more about paperwork pushing than often times truly making a difference. You exhibit your faith and your example in all you do, thank you. Yes many may be aghast at you or I for discontinuing these services, thankfully they may not walk in our footsteps, I pray others will have the courage to truly evaluate their needs and not to live in fear of the what if’s but to have faith to make this step if they are able. Many families continue to receive services that truly make a difference in their lives and for them I am thankful those services are available but also believe there may be tremendous ways for improvement. Prayers for your family, this website and others who are walking this walk. Continue my friend and give your awesome daughters (all of them) huge hugs and I am thankful your husband is so supportive of you and your family as well.
Valerie Strohl
November 7, 2010 at 7:01 pmSusan, thank you for your heartfelt response. I too look forward to no more quarterly meetings. Now our goal will be to build capacity in the marketplace for private pay. I wish you and your family the best also.
Allison Spillman
November 7, 2010 at 7:13 pmGreat post, Val! Love the whole blog, too. I’ll be sure to follow it and to share it with some of my ZCS colleagues.
Also, love that Sarah is helping in the class across the hall from me on Wednesdays.
Valerie Strohl
November 7, 2010 at 7:27 pmPlease do Allison. Please read my blog, “I want the whipped cream..” It is great for educators. Let’s get the conversation started.
Michelle Elser
November 7, 2010 at 8:26 pmHow lucky your girls are (all of them) to have you as their mom, Val! I remember the transition conference for Kensington from the developmental pre-school and regular pre-school (I enrolled Kenzie in both) into the public school kindergarten program. Sitting in my first transition/iep meeting with the principal, guidance counselor and kindergarten teacher on “their” side of the table, and Kenzie’s speech teacher, Shannon, and myself on “my” side of the table, I soon realized there were, indeed, 2 distinct sides to the table, with 2 very different objectives. Like many parents, I mistakenly thought my child would be the unquestionable priority of both sides and this iep was going to be the answer…my child was going to get everything she needed. I was wrong (though polite head nods tried to convince me otherwise, and continued over the years.) I cried as Shannon, geared with a boatload of standardized test results and years of firsthand knowledge working with Kensington, told this group of educators that Kensington was the type of child who would “fall through the cracks” because she was sweet and compliant and did not misbehave. (Her autism has far less negative social aspects than others who fall within the spectrum.) I vowed at that moment that I would NEVER allow that to happen. I knew, however, that the system was not the answer. In fact, it was a big part of the problem and if I left the education to them, she, indeed would have fallen through the cracks. I, as her mother, would help my daughter navigate this confusing linguistic world we live in and find success in school and in the community. I could not and would not depend on the government to do that for me. Like you, had I left it to the government to identify and prescribe precisely what my daughter needed in their eyes, I am convinced, she would never have grown into the bright young woman that she is today. She does not fit the typical definition of autism. To this day (Kensington is almost 14), she does not know the label “autism” applies to her. To label her as autistic immediately changes her capabilities in the minds of others, even in the minds of educators. Her teachers know me and I fight for what she needs in school, but not because she is autistic and the law says they must do “this and that” for her, but the same way I would fight for what is right for my 2 non-disabled children. Like Kenzie, I am convinced that Sarah is the wonderful young woman that she is not because of anything that the government has provided for her but because of what God has provided for her – YOU! (and her entire family!) She is indeed blessed! You’re doing a great job, Val! Keep it up! Love your blog!
Valerie Strohl
November 7, 2010 at 8:36 pmThanks Michelle! We all have such wonderful stories of determination out there. You bring up a good topic of discussion… why the labels? A great idea for a blog! Thanks for your support!
Michelle Elser
November 7, 2010 at 8:38 pmAgreed! Excellent topic for a blog post! Let’s do away with the labels!
Lisa Tokarz-Gutierrez, DSI Executive Director
December 17, 2010 at 12:35 pmValerie! I love your blog! May I reprint some of your content for our Down Syndrome Indiana parents in the month of January 2011. I promise to give you full credit! During the entire month of January, DSI will be discussing waivers and holding an informational meeting on January 25th at St. Luke’s. I would love to speak with you further! You have a beautiful family!
Valerie Strohl
December 17, 2010 at 6:49 pmAbsolutely! Look forward to meeting you!
Shannon
March 6, 2012 at 11:41 pmnow its stories like yours that frustrate me. We are not upper middle class. Now why did you recieve government help yet we do not? We have been denied medicaid 5 time becuase we make to much, yet we literally cannot survive… my dad gives us over 1600 a month to pay for necessities…. including over 400 a month we pay for medical debt which from talking to other parents of kids with DS they recieve medicaid for that. WHY ARE WE BEING DENIED HELP WHEN WE TRULY NEED IT???? We have no extra in our budget, we sometimes live off spaghetti when we cant afford groceries, and an extra in our life is because it was given as a gift from friends or family.
Valerie Strohl
March 7, 2012 at 7:19 amShannon, thank you for sharing, because I think your frustration (warranted frustration, mind you) is why I feel the system is not meeting the needs of people who truly need it. We did not qualify for Medicaid based on our income. What we did qualify for was the Medicaid Waiver, and those are two different beasts. The Waiver does not take income into consideration for eligibility, thus the name “Waiver”. This is also why these programs are so coveted by families. When you hear about waiting lists, most refer to the Medicaid Waiver, at least for our state, because Medicaid alone is completely based on income and medical expenses and other criteria, which must be met. For instance, our daughter would not qualify for Medicaid without the Waiver.
There are many in our community who believe that instead of “waiving” income, eligibility should be based on medical expenses as a percentage of income. For example, you could make quite a bit of money a year and still live in poverty if you have high medical expenses and no insurance – which sounds like your situation.
I’m sorry this has happened to your family. I have only touched on the subject from a very basic overview, but is there anyone you can reach out to to help you? We have government agencies by county, called BDDS (Bureau of Developmental Disabilities Services) in Indiana. They help families try to manage this process.
Please let me know if I can be of any additional help.